Part of the PE package often includes poor body image. It's hard to have a so-called deformity.
Poor body image has been linked to low self-esteem, anxiety, depression, sexual dysfunction, diminished mental performance, disordered eating, etc. It can certainly be more damaging than the actual deformity itself.
Having good vs. poor body image can feel like the difference between living in a luxury mansion with maids, vs. a dirty mattress in a crack den basement– it really affects your quality of life. The good news is that you can move into a more positive headspace for the way you experience your body (I promise).
I remember times where it felt like my body image had hit rock-bottom. I would desperately search online for something to make me feel better, but most of the body-positive stuff out there (especially for women) is about weight; the one aspect of my body I didn't have an issue with.
It's natural for people to compare what they're self-conscious about to others. People who worry that they're fat or that their nose is too big can look at others and develop a sense of what they look like relatively. However with PE being hidden, this process doesn't happen in the usual way. Since PE isn't part of the typical human body, it's far more difficult to gauge how bad it is and how much it affects your attractiveness.
The amount of psychological distress experienced by some with PE varies a lot. It's intuitive to assume that the deeper your PE is, the more unhappy you'll be with it. But that's not how it actually plays out. There are people with mild PE who feel devastated, and people with severe PE who are comfortable with it. The mediating effect of your perception of your PE– let's call it the relationship you have with your PE– accounts for huge part of how happy/unhappy you are with it. But just like any other relationship, keeping it healthy takes work.
Here are some tips:
1. Exercise regularly in a way that's fun for you
Not with the goal of trying to reduce the actual deformity, but simply to experience your body in a way that isn't related to focusing on how it looks. Focus on how it feels instead. Focus on what it can do. And enjoy those endorphins.
2. Develop your identity
The happier with yourself that you are in general, the healthier your relationship with your PE will be. Having PE is just one really tiny aspect of you, and the more stuff you do that you're proud of, the smaller that piece will become. Self-improvement!
2. Focus on what you like about your body
Everyone has something they like about themselves. Download a gratefulness app and record 3 things everyday that you like about your body, with no repeats for a month. (Research shows this really works! Just try it for two weeks and you'll feel better.)
4. Don't focus on attractiveness
Thinking about how un/attractive you are is a slippery slope, especially if you're a perfectionist or prone to anxiety or depression. Don't spend too much time comparing yourself to others, judging the attractiveness of other people, or scrolling pinterest. And definitely minimize hanging out with people who really value appearance.
5. Don't avoid your PE... but don't focus on it either
Contradictory I know. But there's a happy middle ground. If you can barely stand to look at it and avoid mirrors, or treat it like a shameful secret, or avoid doing things you want to do because of it, then you have a problem. Likewise for if you can't stop obsessing over how it looks or how "ugly" it makes you. Monitor how you feel about it and if your relationship with your PE gets too intense, look into talking to someone about it.
6. Remember that it's a bigger deal to you than anyone else.
Really. As much as it might feel like people will focus on it, they won't nearly as much as you do, or even at all. Trust this, and don't avoid situations involving others seeing it. Gradually you'll notice that others don't really care, which in turn will make you care less.
More posts on this topic coming soon.
Tuesday, August 11, 2015
Tuesday, July 14, 2015
Isolation and Pectus Excavatum
Having pectus excavatum (PE) can be isolating.
Other people in your life probably don't have it, and therefore probably don't get what it's like. Often even nurses and therapists have never heard of it.
On top of it, PE is usually hidden under clothing, invisible. So the general public isn't very aware of it at all, and people in your life might not even know that you have it. If they do, they won't really understand what it is.
So it falls on you to educate the people in your life about what it means to have it, which can suck if you don't enjoy talking about it.
Among the people that have it, each person will experience it in a different way. Some people are really bothered by it and develop depression or anxiety, or avoid dating. Others couldn't care less. Some get teased or bullied for it, some don't.
There are so many variables that impact one's experience of PE. The most obvious ones relate to the PE itself. How deep is it? Is it symmetrical? Does it mess up your breathing? Does it warrant invasive surgery to get rid of it?
Gender is another major experience-shifter. The chest is a very sexualized area for both men and women but in different ways. Intersex and trans people will relate to their bodies differently than cis-gendered folks.
Age is another one, physically and mentally. Are your bones still pliable enough for treatments? Have you become more self-confident as you've grown up?
Even social class comes into play. Can you afford the surgeries or psychological treatments? Is your mental energy taken up by other stressors like meeting basic needs? Do you have what's needed (languages, insurance, education, internet/computer access, etc.) to access resources?
It's human nature to want to connect with similar others; there are lots of places on the internet where people with PE go to chat. But sometimes even scrolling through these supportive communities can be triggering. (Emphasis on the sometimes– usually connecting with others who have PE too is a really empowering experience, and de-isolating.) Someone who can't afford surgery or who is too old for it might feel low reading about how happy others feel post-op. Someone looking to feel more positive might not want to read how others have struggled psychologically for years. And so on.
Anyways, if you have PE, odds are that you feel different from others– even others who have it too.
Learning what works for you to reduce your own sense of isolation is important. This could mean strengthening the relationships in your life in general, with family, friends or significant others. It could also mean taking the time to find someone else who has a similar relationship to their PE. Or talking to a therapist. And this probably goes without saying, but if anyone ever makes you feel bad about having PE, avoid them. Sometimes isolation is a healthy thing.
Other people in your life probably don't have it, and therefore probably don't get what it's like. Often even nurses and therapists have never heard of it.
On top of it, PE is usually hidden under clothing, invisible. So the general public isn't very aware of it at all, and people in your life might not even know that you have it. If they do, they won't really understand what it is.
So it falls on you to educate the people in your life about what it means to have it, which can suck if you don't enjoy talking about it.
Among the people that have it, each person will experience it in a different way. Some people are really bothered by it and develop depression or anxiety, or avoid dating. Others couldn't care less. Some get teased or bullied for it, some don't.
There are so many variables that impact one's experience of PE. The most obvious ones relate to the PE itself. How deep is it? Is it symmetrical? Does it mess up your breathing? Does it warrant invasive surgery to get rid of it?
Gender is another major experience-shifter. The chest is a very sexualized area for both men and women but in different ways. Intersex and trans people will relate to their bodies differently than cis-gendered folks.
Age is another one, physically and mentally. Are your bones still pliable enough for treatments? Have you become more self-confident as you've grown up?
Even social class comes into play. Can you afford the surgeries or psychological treatments? Is your mental energy taken up by other stressors like meeting basic needs? Do you have what's needed (languages, insurance, education, internet/computer access, etc.) to access resources?
It's human nature to want to connect with similar others; there are lots of places on the internet where people with PE go to chat. But sometimes even scrolling through these supportive communities can be triggering. (Emphasis on the sometimes– usually connecting with others who have PE too is a really empowering experience, and de-isolating.) Someone who can't afford surgery or who is too old for it might feel low reading about how happy others feel post-op. Someone looking to feel more positive might not want to read how others have struggled psychologically for years. And so on.
Anyways, if you have PE, odds are that you feel different from others– even others who have it too.
Learning what works for you to reduce your own sense of isolation is important. This could mean strengthening the relationships in your life in general, with family, friends or significant others. It could also mean taking the time to find someone else who has a similar relationship to their PE. Or talking to a therapist. And this probably goes without saying, but if anyone ever makes you feel bad about having PE, avoid them. Sometimes isolation is a healthy thing.
Saturday, June 27, 2015
Swimsuits for Pectus Excavatum
Once, my boyfriend was looking through my facebook albums and noticed the date of an old beach photo– "Hey wait... oh my god, isn't that the same bikini you have now... ha! it is! hahaha! Why don't you just get a new one?!"
My avoidance of swimsuit shopping had caught up with me: 7 years of wearing the same one. Fortunately I don't go swimming much anyways.
As if bathing suit shopping isn't unpleasant enough already, let's throw in a deformity. The hunt can be emotionally draining to say the least. But it's worth gritting your teeth and braving the search process because once you find one that you feel comfortable wearing in public, the overall burden of having PE lightens.
I'm happy to report that I now have three different ones (and have since deleted that photo he found in the depths of my account). Here are some bikinis for inspiration in your own search:
My avoidance of swimsuit shopping had caught up with me: 7 years of wearing the same one. Fortunately I don't go swimming much anyways.
As if bathing suit shopping isn't unpleasant enough already, let's throw in a deformity. The hunt can be emotionally draining to say the least. But it's worth gritting your teeth and braving the search process because once you find one that you feel comfortable wearing in public, the overall burden of having PE lightens.
I'm happy to report that I now have three different ones (and have since deleted that photo he found in the depths of my account). Here are some bikinis for inspiration in your own search:
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| Black Bandage Cut Out Bikini |
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| Long-Line Halter Top - Anthropologie |
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| Long-Line Halter Top - Anthropologie |
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Crisscross Strappy Halter Bikini - MayKool |
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| Wrap Around Halter - Ani Bikinis |
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| Body Wrap Swim Top - PINK Victoria's Secret |
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| Aurora Printed Swim Top - Marc by Marc Jacobs |
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| Vitamin A Antibes Long-Line top - Anthropologie |
If you've discovered others that work well for PE bodies, please post in the comments!
Saturday, April 11, 2015
15 Celebrities with Pectus Excavatum
Hayden Panettiere
Sean Gunn
Actor best known for playing Kirk on Gilmore Girls. In this scene, Kirk says to the elders about Luke, "I think he's got body issues". Best quote from that show by far!
Paula Abdul
Singer
Pieter Hoogenband
Dutch former swimmer and triple Olympic champion
Tori Spelling
Actress
Nick Lachey
Singer and actor
Brendan Fraser
aka George of the Jungle
Billy Zane
Titanic antagonist
Joaquin Phoenix
Puerto Rican-born American actor, producer, and musician
Jeff Goldblum
Actor
Shun Oguri
Japanese actor and director
Kirk Douglas
Actor, most active in the 1950s and 60s
Anyone I missed? Add them in the comments and I'll update this list!
Heroes and Nashville star
Parker Cannon
Lead singer of pop-punk band The Story So Far, performing at Warped Tour 2013
Neil Patrick Harris
aka womanizer Barney Stinson
Grace Park
Actress, often in a bikini on the TV show Hawaii Five-0. More pics here.
Neil Patrick Harris
aka womanizer Barney Stinson
Grace Park
Actress, often in a bikini on the TV show Hawaii Five-0. More pics here.
Sean Gunn
Actor best known for playing Kirk on Gilmore Girls. In this scene, Kirk says to the elders about Luke, "I think he's got body issues". Best quote from that show by far!
Paula Abdul
Singer
Pieter Hoogenband
Dutch former swimmer and triple Olympic champion
Tori Spelling
Actress
Nick Lachey
Singer and actor
Brendan Fraser
aka George of the Jungle
Billy Zane
Titanic antagonist
Joaquin Phoenix
Puerto Rican-born American actor, producer, and musician
Jeff Goldblum
Actor
Shun Oguri
Japanese actor and director
Kirk Douglas
Actor, most active in the 1950s and 60s
Anyone I missed? Add them in the comments and I'll update this list!
About This Blog
Having pectus excavatum (PE) can be pretty hard. At least it has been for me– I've had my share of insecurity and body image issues (beach season, anyone?). However, I gradually learned how to cope with and accept it.
This blog focuses on the psychosocial effects of living with PE. PE can really impact a person's mental health, but unfortunately this is often overlooked.
Excavatum Crush is a resource to help people accept their PE bodies and to find support from similar others. It is intended particularly for those who are living indefinitely with PE, i.e. those who can't or aren't getting the Nuss / Ravitch.
This blog focuses on the psychosocial effects of living with PE. PE can really impact a person's mental health, but unfortunately this is often overlooked.
Excavatum Crush is a resource to help people accept their PE bodies and to find support from similar others. It is intended particularly for those who are living indefinitely with PE, i.e. those who can't or aren't getting the Nuss / Ravitch.
If there's anything in particular you want this blog to cover, let me know in the comments!
You can also email me at: excavatumcrush@gmail.com
You can also email me at: excavatumcrush@gmail.com